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husband with advanced prostate cancer refuses treatment after doctors told him his sentence

lindachampagne60

Posts: 16
Joined: Sep 2011

Sep 05, 2011 - 10:28 pm

My husband has been diagnosed with cancer of the prostate spreading through his bones, groin, legs, swollen testicle ,swollen leg and foot on right side, on hydrocodene and metadone. He recently was on morphine because doctors tod him he had 3 to 6 months to live. He was alergic to the morphine, and it made him itch, he was constipated. I dont know how doctors arrived at that conclusion from one recttal exam, and two blood test, then my husband refused treatment, any treatment except for pain. he is at a place right now where he is so much in pain, only a hot water bottle between his legs , is the only thing that gives him relief. he limps when he walks. He cant find a comfortable place to sit anywhere, even with pillows. He is very cranky, I undersatand why, but when the doctors gave him the 3 to 6 month sentence, and they said all they can do is give him pain meds, so i guess it was already too late. He had four brain seizures in the last two years. We dont know where the cancer has spread, and if anyone has experienced this with a loved one, please tell me what to expect, no matter how morbid. I need to know, and I cant go to the doctors with him, as he doesnt want me there or to talk about it. He had a psa two years ago of 34. im sure its higher now considering his awful pain. He refused a biopsy.. Someone out there, if you can give me as much info as possible, I would be grateful. How long do you think he has with those symtoms. Linda

I'm really sorry for the situation you are handling..
I don't know to answer your questions, but consider seeing another doctor, maybe there is another medicine that can help with the pain and treating the cancer.
I really hope and pray that he will get better!!

Linda, I am at or past the stage of decline of your husband but with the aid of hospice, exercise in a hot tub, plenty of meds I am still able to work a job 18 hours a week and play a little golf. Today I take my 4th treatment for pain control on large tumors on both ribs. I had my spine tumors radiated in May and it helped with the pain alot. The meds will never get any thing close to all the pain, believe me. So it is way beyond time for a cure and he needs to get with hospice asap to get back some quality of life and anyone who tells you otherwise just wants your money. Hospice and all the meds, equipment, etc is totally free of cost. As far as time left to live the cancer itself will eventuallly make him to weak to fight off some other illness. The meds only make you weaker but no human being could take the pain involved without the meds. He could well several years and have a decent quality of life if his attitude is right and he takes control of the situation. I have a lot of work involved in staying out of pain but without the effort life would not be worth much. Try not to stress and get him some comfort. I wish you all the best, Mark

Linda
I am sorry for the advanced diagnosis of your husband. Hospices may provide the best comfort to patients in similar status, if your husband wishes to do nothing about the disease. Many patients live many years with this cancer which ironically causes discomfort and a nasty end of life.
Nevertheless you could get opinions from other oncologists and decide on a conclusion after investigating on options.

There is one newer drug which has been on trials on advanced cases with bone metastases which may provide some pain relief caused by bone mets. It is named denosumab (XGEVA is the trade name) and it attacks prostate cancer in bone. You can read details in this site;
http://www.worldpharmanews.com/amgen/1518-xgevatm-denosumab-significantly-improved-bone-metastasis-free-survivalhis status.

Thankyou VGama for you concern. I wish he would take the advice of others and try something. Its the doctors that said they couldnt do anything more for him, and I see him declining. I told him what you said about the new drug, and he doesnt want to hear it. He is also starting to do strange things, like putting the catsup with the dish detergent. He has already had four seizures. i really wish I knew what stage he was in

Linda,
So sorry to read about your husband. One thing you did not mention is his age. Would you mind sharing? Also you mentioned two years ago his PSA was 34. Was no treatment done at that time?
It also sounds like your husband has not had a prostate biopsy if I'm reading your post correctly.

As others have suggested I would encourage your husband to seek a second opinion.

Thankyou for your post and answering me. He is 66 years old, NEVER had any treatment and NEVER had a biopsy. It was the VA that told him he had three to six months to live, I just dont see that happening, although he is suffering

I do not want to criticise your husband for his attitude but his doctor’s “death threat” is in my opinion unreliable and false.
In your first post you commented that the advanced diagnosis was done via a DRE and two blood samples. In your last answer to Larry above you also commented that none biopsy took place. I wonder what other tests (image studies) or past clinical staging or health check-ups’ results occur to lead the doctors in getting to the conclusion of three/six months of life expectancy.

Your husband at 66 is very young to give up to this bandit. There are so many stories similar to the facts of your husband, in which successful outcomes occured, in defiance of the odds, which makes me to insist in saying for him to get a second opinion.
Blood tests can signal with high precision any probability of cancer but only a biopsy will rule its existence.
The doctors may have found through the blood samples high markers for PSA, PAP, PC3, etc. However, many patients with high levels of those markers survived many years with reasonable control of the disease. Even the ones that choose not to take any medication or do treatments have done well in the control of its advance for a better quality of life.

In this site YANANOW (You are not Alone now), you can read the real stories of some patients with advanced cases of prostate cancer. I hope your husband take some time and listen to your reading or that he gets to read them himself.
Here is the direct link for very high PSA cases;
http://www.yananow.org/exp_data.php?query=where+cast(diag_psa+as+decimal(9,4))+>=+20+order+by+cast(diag_psa+as+decimal(9,4)),name&desc=PSA+greater+than+20

In this site your husband can read the story of a patient who had an initial PSA of 1,500, with a very high Gleason score of 9. He was staged T4 with distant metastases at the bone and his only treatment option was Hormone. He did ok. Please read;
http://www.yananow.org/Mentors/AlanC.htm

Your husband could also engage in certain alternative therapies or diets that are known to be friendly in lowering symptoms of cancer. Be careful because some are unreliable and could jeopardy his status leading to a worsen outcome.
Just press the name “Alternative Therapies” in this site to get links;
http://www.yananow.org/choices.htm#alt

I hope my post can help you and your husband in sharing these delicate moments of his care.

Thankyou for that site. i will read it and beg my husband to read it. i agree with you as fas as the sentence my husband was handed. I did forget to mention one thing. In the beginning, after the prostae exam, they did give him a very strong dose of antibiotics, and when that did nothing, he refused all treatment. Maybe thats why doctors said there is nothing they can do for him, if he wouldnt help himself. But why the 3 to 6 months to live???

Linda,
I agree with Vasco and I would STRONGLY encourage your husband to not give up the fight! We do not know the extent of his other health problems but for the prostate cancer issue I would encourage you to seek another opinion. Get the biopsy done to determine a Gleason Grade. This will be made up of two numbers such as 4 + 3 = 7 or 4 + 5 = 9 etc. It will also tell how many sample cores have cancer in them. I am not a doctor nor even in the medical field but it sounds like the 3 - 4 months you mentioned might be from some other factors besides the prostate cancer. ASK questions of the doctors on the side. Your husband is a veteran so encourage him to fight! Don't give up. There have been many men that have gone on to live many months and years with advanced prostate cancer following proper treatments.

Without a biopsy, which he was afraid to have, I dont see why they gave him the 3 to 6. If there was something else going on, shouldnt they have told him?? I think he is at the end, because he is so skinny, limps, and is in costant pain

Linda,
Please do keep us updated on you and your husbands progress. We are truly a group of caring people on this forum. I'm truly sorry to read about your first husbands death to cancer also.

Also know that their is a private email feature on this forum (CSN Email) where you can talk off line to members if you want. I'm sure any of us would be glad to listen to you if you need that. As you know we have male and female members on the forum.

I believe many of us have the same goal on being here, Helping others, learning and sharing our experiences with others.

now for the waiting game. If anyone knows of anyone who passed away from prostate cancer, will you please give me all symptoms to the end??? PLEASE! No matter how tough it is, i have to know when its time to admit him to the Va, if he cant walk, or how long will I alone have to take care of him or get hospice. I just need to know. nobdy wants to give those answers, but i need to know what to look for, and when to call the doctor for more pain meds or whatever i need to do. im really thinking he is getting bad, but wont talk about it. He limps, he has a hard time gettimg up from a sitting position, and has to sleep with a hptwater bottle. THANKYOU PLEASE, Dont soft soap it. i need to know

now for the waiting game. If anyone knows of anyone who passed away from prostate cancer, will you please give me all symptoms to the end??? PLEASE! No matter how tough it is, i have to know when its time to admit him to the Va, if he cant walk, or how long will I alone have to take care of him or get hospice. I just need to know. nobdy wants to give those answers, but i need to know what to look for, and when to call the doctor for more pain meds or whatever i need to do. im really thinking he is getting bad, but wont talk about it. He limps, he has a hard time gettimg up from a sitting position, and has to sleep with a hptwater bottle. THANKYOU PLEASE, Dont soft soap it. i need to know

Hi Lewvino. My husband is now walking in hos sleep, doesnt know where he is, doesnt understand me, pees on the floor anywhere. i dont know if its a seizure or his meds. anything you can tell me would be greatly apreciated

Linda,
My dx was similar to your husbands. In December 2009 I was having severe pain in my back and legs it became so bad I could not sleep and walking was difficult. I spent many nights in the jaccuzzi because it was the only relief I could find. In January, after seeing several doctors, I was diagnosed with stage 4 prostate cancer with mets in my spine, legs, pelvis, ribs, arms, neck and skull. My PSA was 978 and I had lost 30 lbs from Dec thru Jan.
My Urologist recomended either hormone shots or an orchiectomy. I chose the orchiectomy along with daily casodex.

It has been over a 1.5 years and my life has improved dramatically. My first psa after surgery was 1 and since it has been less than 0.1 not detectable.

Reading your post reminded me of how horrible this disease is and how blessed and happy I am to be alive today.

That is amazing. i want him to read this, but he said he is ready to die and doesnt want to talk about it. Very frustrating for me. He is going to leave me a widow for the second time, the other husband had colen cancer

Welcome. I’m truly sorry that both you and your husband are suffering though this ordeal and hope some the excellent info previously provided by the knowledgeable posters has helped you cope. I wanted to offer a few add'l comments without contributing to the anxiety and stress levels that already must be at challenging levels.

With due respect to you and husband: If husband has made his decision to stop fighting the PCa (IMO it is unclear if that is the “official” dx based on the info provided thus far—it could be another type of cancer or disease), AND he has made that decision knowing full well that there are palliative txs (not cures) for late stage disease, AND he has made that decision being of sound mind, not under the duress of debilitating pain and severe depression, then IMHO, his decision is to be respected. He should not have to suffer (as you described) and should be allowed death with dignity. Additionally, if he has advanced PCa with bone mets, he is at risk of falls and further injury which would only add to the severity of the current situation.

As another poster has already suggested, in-home hospice care should be arranged without delay. You or he (if he is able) must talk to his doctor, advise him of the decision and request that a social worker and hospice nurse be assigned to husband’s case immediately. Hospice care will provide comforting services/strong drugs to mitigate husband’s pain (advise them of his reaction to morphine) and make him as comfortable as possible, without performing any heroic measures to prolong life. And hospice workers should be able to assist & provide services for you as well.

If, on the other hand, husband has a change of heart, maybe after reading some of the previous posts from men who have “been there and back,” then I recommend you immediately find an new, independent oncologist who specializes in PCa to 1) establish and confirm that husband has T4 mPCa (stage 4 metastatic prostate cancer); 2) discuss the best palliative txs to address the pain and curtail further disease progression, along with any possible side effects; 3) ask whether there are any cancer/caregiver support groups available that YOU can attend for yourself. You’ll need to take care of yourself first, before you can adequately take care of husband. For this you will need more than the advice from the good & caring people who post on this site can provide...you will need the face to face personal contact and experience from the people in the support group (and the group’s trained facilitator) to help you through this difficult journey.

I know about how the drugs for pain and the pain itself can cause very strange behavior. I have had pains that make a level 10 something to wish for that lasted over 90 minutes. It can be horrible. Always try to stay ahead of the pain regardless of whether you think you need the meds or not. Hospice will also provide radiation on tumors to relieve pain and in my case that has done more good than the medicine. But the meds must be taken if pain is an issue. It is important to keep exercising and eating well. By having prepared for this day for the past 8 years I have enabled myself to still be able to work a job and garden and play golf. I can barely walk and use a wheelchair some but I will never give up trying to improve my quality of life. Your husband has to do it for himself, no one else can or will. If he does nothing or everything available his life expectancy is unknown. I was given a 50% chance to make it two years. It has now been eight. Hospice will be there if he chooses and I am able to do all I can because I have it. Pay no attention to what doctors say about time left. They have no idea and neither does anyone else.

Linda,
My thoughts and prayers are with you and your husband. My husband was told 2 years ago (2 years after original diagnosis and treatment) by his oncologist that he had 1 year to live. Wrong--he's still here! Also have a favorite name for that "all-knowing" doctor! After being told that, my husband made some serious financial and life decisions that were only because of that 1 year lifespan prediction...
Few facts: he was Gleason 9 after his rp surgery, at age 61, and the cancer had spread locally at that time. 2 years ago it was found in his lungs, and 1 year ago in his bones. He's had radiation and hormone treatments and while he's not great, his quality of life is better than we had thought it would be. No one knows that "how long do I have" answer and what a disservice to make those God-like predictions. I hope your husband will find some medical people he trusts and talk with them to determine what might be done to help him and your whole family. It's a scary time, and cancer and the pain and fear can make rational decisions difficult.

I am very sad. He may be right to acquiesce, but if he chooses to fight in any reasonable (or unreasonable) way he can, he may help find answers for others (i.e. the "rest of us") and like chicken soup, his fight against the demon will do no harm and possibly much good. I wish (and will) him well in all things.
DavidP.

Hospice is ALWAYS an option...a compassionate option. But in order for it to be an option, some one, a loved one, a caregiver, linda, a close family member, (or all of them together) must first, make the decision and then, MAKE the call to the doctor. I hope, if linda is still reading these posts, that she can muster the strength during this difficult and challenging time, with the support of a close family member and friend by her side, to make that call (if it hasn't already been made--I hope for husband's sake, it has been made). It is heartbreaking to read that this poor man is still suffering when hospice care is free and available for cases/situations exactly like this.

Hospice is truly a blessing with your situation at this point. I had them there with both my mom and dad from earlier on until the end. They can help with anything and everything. One cannot imagine all they can do until you experience their involvement. May God bless you all.

Yes Mrspjd, i am still reading the post. My husband slept 24 hours straight, no food and no beer, ,,,,, did i ,mention he drinks 18 beers a day? He has methadone and one other for pain. He oesnt want hospice, not yet

Having been involved with hospice as both a caregiver and volunteer, I can't say enough about what they do. I don't know your true situation--no one can--but please know that hospice is as much or more for your help as your husband's. His wishes are important but he may no longer have the ability to decide for himself what is best. You may have to do that both for him and for you. At least call and discuss the situation with a hospice worker. Even if they don't come to your home, they can help you. You have to take care of yourself in order to help your husband.

John, that is my experience with hospice also. Sometimes there is unintentional denial and even bitterness on the part of the caregiver/family/loved ones, as the burden and responsibility of difficult decisions fall on their shoulders...decisions that no longer can be made by a patient who may be incoherent, self-medicating, or acting irrationally due to advanced/end stage disease.

You couldn't be more right about hospice being a compassionate choice as much for the caregiver as for the patient. Here’s a very good website about hospice care services. Be sure to scan down the page and click on each of the hospice sub-headings:
http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3356

Linda,my heart and prayers go out to you and your husband.You mentioned he was a veteran.You also mentioned he 66y/o,could there be a link between his PCa and Agent Orange?I have heard and read about this not only here but also news reports,even Sen.McCain,has somewhat recongized, that their "might be" a chance of AO causing PCa.This may be another question to ask VA Drs. Again,be strong,positive as best you can.

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